Even though my mother and I were no strangers to tantrums, Jan having had his share, it was still a punch to the gut to experience for the first time the episodes this particular group of children would have.
Some of them had not outgrown their hyperactiveness. They would run from window to window, screaming. They hit tables with their fists and banged their heads against furniture. They threw themselves about wildly, shouting themselves hoarse. The children hardly took part in the activities at all. They could not. They had superheroes for teachers, but not mind-readers. No one knew what these children were experiencing.
I can only imagine how my mother’s heart must have shattered, watching them. She would have tried to hug and calm every one of them if she could. As for me, I remember my insides feeling wobbly and hollow the first day my mother and I left the institution. This was nothing like I remembered Jan’s other schools to be – bright, cheery, busy. It had been selfish of me, but I thought, what had we gotten Jan into?
The feeling worsened when we walked past one of the holding houses, where the patients were being lined up to be brought someplace. As my mother and I passed them on the footpath, the entire row began reaching out to us with their hands, grappling and moaning. One of them nearly caught hold of my shirt sleeve.
Horror movies use this gimmick to try and scare people, and it is usually funny when the effect does not quite come off. But this was not a movie. This was real. It was very sad and the experience terrified me.
My mother and I had almost wanted to bring Jan home that first day itself. Still, we thought it was better for Jan to be there than idle at home. But after spending a week at the place, Jan began to show signs of regression. He resorted to hitting things and running and screaming, rather than busying himself with something he liked. Jan had begun to imitate the other children at the centre.
We withdrew Jan after that. Jan eventually went back to being himself. The memory of what happened there stays with me. I remind myself of how I had wanted to run from those patients, rather than take their hands in mine. It is good for introspection, and set off ripples of little changes to my principles of right and wrong from then on.
The 3rd Step
A man with an autistic son once told my mother that he would have given a lot just to hear his six-year-old call him “dad”. And there was Jan, able to demand this and that of “Mummy” and “Daddy” and “Jie Jie” with relentless ease.
Some think we are fortunate that Jan is able to do what he does in his daily routines. They think we are fortunate because he likes conversation, and is mostly able to let us know what he wants. He talks. Not like the great orators of ancient Rome, but talk he does. We do not have the heart to tell them of Jan’s bigger and more complicated tantrums and fits, as compared to some of their children. It would accomplish nothing good.
The saying “the grass is always greener on the other side” may apply here, but somehow it feels cruel. My mother wishes Jan could have gone to mainstream schools, that he could be more independent with his toilet needs. She looks on longingly at those with Asperger’s, as they are able to go to school and work with some semblance of normalcy. Then we realised that it is no easier for them than any other children with autism. They are the ones who are the most vulnerable to the whims and slights of common people, and are the ones made to feel like they are the most different of all.
The 4th Step
There are inclusion and integration programmes that provide for the more mildly autistic individuals capable of entering mainstream school.
On 18 June 2010, an online broadcast by ABCNews.com showed an autistic high school graduate named Eric Douglas Duquette from Smithfield, Rhode Island. He was the salutatorian and made a speech on his graduation day.
‘It is with great humility and pride that I stand before you as your salutatorian. I started my academic career being diagnosed with a serious learning disability, autism. My parents were told that my prognosis was poor, and that I would end up, probably end up in an institution. They thought differently. Today I stand before you, accepted into every institution of higher learning that I applied to, so I guess in a way the experts were right about the “institution” thing.’
According to the broadcast, Eric was to move on to college to major in biology. He is also reportedly fluent in Spanish. It seems that every day, his parents focused on teaching him ten words for up to eight hours a day, even teaching him sign language as a supplement.
The broadcast presenter described Eric as having been ‘the child who learned emotions with the determination that some of us learn calculus’. Eric Duquette demonstrated the fruits of his learning, too, in what I thought must have been one of the most memorable moments of the speech.
He said, ‘Never underestimate the power of a smile.’ And he smiled at his fellow graduates.
If an autistic person can smile at those different from him, why should regular people not smile at those different from them?
Jan is perhaps not as fortunate as Eric, and there are many others who may not be as fortunate as Jan.
The 5th Step
‘I want to go to school.’
This was what my brother told my parents again and again after he had graduated from MINDS Rainbow Balestier School at twelve.
We are
